Thursday, March 15, 2012

So it’s been over a week since I returned from D.C. and my very first JDRF Government Day. A week filled with WTF blood sugars, lots of mopey and cranky moodiness, and an icky virus - all impeding my ability to write a coherent post on the magic that was Gov. Day. So maybe a rambled bullet list of highlights will have to do.

Busy is good - especially when you feel overwhelming home-sickness. Our schedule was pretty packed from the time we arrived to the time we left, but I really enjoyed that. For some reason I was very home-sick on this trip . . . . even before my train had left Connecticut I was missing home.

Diabetes is a strong bond. I think part of the reason I felt so home-sick was because I didn’t know anyone at Gov. Day - beyond some emails and phone calls. Meals with large groups of strangers usually aren’t in my comfort zone, but weirdly enough I didn’t feel like anyone was a stranger. We all either had diabetes or love someone who does, and somehow that makes an instant friendship form . . . . especially when you need help buying your Metro ticket because your blood sugar is 47 and you can’t work the machine.

Bloggers will always somehow find each other. As I walked to the elevator for breakfast my first morning there, I met up with a woman named Kathy who I had seen at the “newbie session” the day before. As we sat together eating and chatting, the subject of pumps came up and she said she used to use an Animas. When I asked if she had gone back to MDIs, she told me she had an islet transplant and I was like “Oooohhhhh, wait, I KNOW you!!” It was Kathy from My New Islets - whose blog I had recently commented on saying I hoped to meet her at Gov. Day!! Soon after, to my delight, Type 1 Advocate Gramma came over and introduced herself. We also ran into each other at lunch on The Hill, and she was smart enough to get a picture (which I’ve shamelessly stolen). She is awesome!

Introductions are powerful and will make me cry. That first morning we went around the room and each told a little bit about ourselves, and it was amazing. (It may have been my favorite part of the whole weekend.) There were people newly diagnosed, and people living with diabetes for 40 or 50 years. There were parents with one or multiple children and grandchildren with diabetes, and some who had lost their loved ones to the disease. There were spouses and siblings and pregnant diabetics. There was a pump company employee who hopes to be out of a job one day because diabetes has been cured. We were a varied mix of people touched by diabetes, but each and every story was a huge inspiration and will stay with me for a long long time.

I’ve never considered myself much of a fundraiser, but government advocacy can raise more funds than you’d ever imagine. Our mission in D.C. was to lobby our representatives to support the renewal of the Special Diabetes Program. Renewal of its two parts will ensure $150 million for research to prevent and cure diabetes and its complications, and $150 million in diabetes funding for the Native American population. Not. Too. Shabby.

Does the thought of meeting with political big-wigs make you shake in your shoes? Me too, but I now realize how silly this is. Our representatives are just people, and since they represent us it is their job to hear about our needs. You are the expert on life with diabetes, and JDRF provides the political information you’ll be discussing and does a terrific job training you on how the meeting will go. (Shout out to JDRF Government Relations manager Neils Knutson and his session “What to Expect when you’re Expecting . . . . to meet with your Representative” for giving us first timers all the info we needed!)

Would I change anything about the experience? Well, just a few minor things. I wish our hotel had been more central to D.C. - we were out in Arlington, Virginia and getting around was kind of a hassle. Shuttle service didn’t exactly run on schedule and the Metro can be difficult for a first timer (especially when dealing with a low blood sugar, as mentioned above.) Cabs were an option, but would not be reimbursed. I’m all for keeping overhead low to allow for more money to diabetes research, but as a volunteer with a very tight budget (since Pete and I are still unemployed and keep getting turned down for everything we apply to) it was tough to worry about choosing between getting lost in D.C. with a low blood sugar or spending money on food and transportation that may not be reimbursed.

Before I knew it, I was back on the train home and looking forward to seeing Pete and K.C. and sleeping in my own bed. That’s when it hit me that OMG I actually lobbied to Congress on Capital Hill! I guess I’m no longer that shy girl who never spoke in class and went to great lengths to hide diabetes. And that’s why I mean it when I say “life with diabetes isn’t all bad “.

I have been a T1 for almost 20 years and am embarrassed to say I'd never known about these events other than to pass them over when I get my monthly JDRF emails :/ No more, though! I would LOVE to go to one of these in the future. :D

I'm so proud of you -- a lobbyist! A good lobbyist with an honest-to-goodness important condition to talk about! I'm sorry about the WTF blood sugars -- do you have them on normal days. 47 is low enough to ask your doc about my pet project: adrenal insufficiency. But if it was strictly travel lows, it's probably not AI. Good for you, and thanks for being our advocate in the capitol!

thanks so much for sharing your experience, bullet points and all (i'm a fan of them, personally). and thanks especially for going there in the first place and using your voice to advocate for our community! :)

I'm so bummed I didn't get a chance to hang out a bit with you, but - people like you make the Gov. weekend incredible (my 2nd time now). I agree - the stories during the introductions are incredible, and it is amazing to see how just a short meeting with a legislator/their office can make a difference. Hope to chat a bit next year!

I Am . . .

Karen Graffeo

I'm a Knitter living with Type 1 Diabetes. I'm not a medical professional nor am I giving medical advice - I'm just a girl sharing my personal thoughts and experiences with diabetes. I live in New England with my wonderful husband, my adorable cat, and lots and lots of yarn.